Hi, my name is hils61! I have a question about early retirement — Scope | Disability forum
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Hi, my name is hils61! I have a question about early retirement

hils61
hils61 Member Posts: 5 Listener
edited October 2 in Work and employment
Hi Everyone, I have a question, I have applied for early retirement due to ill health from my job, my employer supports this, however HR and especially Occupational Health say they need not only a diagnosis but also a prognosis. 
I have attended Neurology several times and my Neurologist's opinion was I had CFS and he worded it as follows "Chronic Fatigue Syndrome, which is a Functional Neurological Disorder" 
I was diagnosed in 2015 but have had symptoms since around 2003/2004, I do not appear to have had any episodes of remission the symptoms just seem to get gradually worse. 
I reduced my hours at work to see if that would help but the cognitive symptoms began to worsen and I just couldn't concentrate anymore. 
Has anyone been able to challenge OH on the topic of prognosis?
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Comments

  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Hello @hils61

    Welcome to the community, I hope you are well.

    I just wanted to let you know that I have moved your query over to our employment category, and altered the title so that other members have an idea of what your question is about.

    Have you sought a supporting letter from your neurologist or GP?
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  • hils61
    hils61 Member Posts: 5 Listener
    Hello there thank you for replying and for moving my query.
    The neurologist I initially saw has now retired, my last appointment was with a registrar, he took a good history and I have been for a MRI of my brain, which of course did not show anything other than "subtle age related changes" 
    OH contacted the new Neurologist, who I have never actually met and she was reluctant to give a diagnosis until I have had an EEG, my doctor did a MMSE and I managed 25/30 with short term memory and recall being a problem, they were also taking about referring me to psychiatry, I hope this would only have been if something was found on the MRI. It has been difficult trying to do this over the COVID period, OH contacted a GP I have met once and a Neurologist I have never met, I don't feel that's acceptable, I asked for an appointment with my GP but the receptionist called to say it would be a telephone appointment and not until 15/10/2021. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    Hello @hils61 - & welcome to the community. I'm unable to answer your query as I don't know much about ill health retirement, but I would like to make some comments.
    I don't know if you quoted the neurologist who said you had, 'Chronic Fatigue Syndrome, which is a Functional Neurological Disorder,' because you're as shocked as I am, or if you didn't know that CFS & FND are two completely separate disorders. I'm hoping you didn't give this 'diagnosis' to OH as this may have caused some confusion. FND is not a neurological disorder, rather where the function of the nervous system isn't working properly. CFS on the other hand, altho the cause is largely unknown/debated, is considered a neurological disorder. The term Myalgic Encephalomyelitis (ME) is now preferred, altho Myalgic Encephalopathy is thought to better define this disorder. I'm sorry if I'm saying what you already know, but mentioning it 'just in case.' Some interesting reading here on the subject: https://meassociation.org.uk/about-what-is-mecfs/      if you scroll down to the 'Nomenclature' section.
    I hope that you get a good outcome from talking to your GP, & that he doesn't mention Functional Neurological Disorder (FND).
  • hils61
    hils61 Member Posts: 5 Listener
    I have done a lot of reading since this diagnosis and actually was re=referred to Neurology by my GP at the time, the Neurologist asked why I had returned as he had given me a diagnosis and nothing else could be done, he gave me the website for FND on a scrap piece of paper and was extremely patronising, hopefully this GP will have an idea of what I am talking about, actually it will be a good start if she listens to what I am saying. It's so frustrating 
    Thank you for the info, very much appreciated
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    You're very welcome. I do hope your GP listens......I fail to understand how they can diagnose a patient if they don't do so!
    Whilst you could have both CFS/ME & FND, if it's the case that it's one or the other, these 2 disorders should be disentangled. I certainly am not impressed with your neurologist; reinforced by his patronising attitude, rather than offering referrals to help if he thought it was FND (which may therefore change a prognosis, & partly why I commented). I hope you get things resolved, & kindly let us know how you get on. My best wishes.

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